I was surprised and pleased to be nominated in the “Improvement to Care and Service” category and even more surprised to have been chosen as the winner. Sitting beside my fellow nominees on the night and hearing of their achievements, I wondered if they had sent the invitation to the wrong person. (Susan Coyle and I are often receive each other’s calls). Dr Ken Donaldson contacted the winners asking us to write a blog about our work and while I do not believe I have done any more than the other specialist nurses in our Health Board, I would like to use this opportunity to raise awareness of Parkinson’s disease and the difficulty people with this condition can face when admitted to hospital.
I began as Parkinson’s Nurse Specialist in May 2009. Dr Rhind (retired Care of Elderly Physician) proposed a business case for the post and with 2 years funding from Parkinson’s UK, the Health Board agreed. I had previously worked on ward 18, DGRI since 2002 and this was where my interest in this chronic neurological condition started. At the time of my starting, Parkinson’s UK (formerly Parkinson’s Disease Society) were working hard to promote their hospital “Get it on time!” campaign as they were consistently hearing of people being admitted to hospital and having their usual medication regimes not adhered to resulting in poor symptom control and prolonged in-patient stay as a result.
Parkinson’s medication is determined on an individualised basis and people with the condition are reviewed by Dr Shona Donaldson (Associate Specialist) and myself usually on a 3 to 6 monthly basis in order to customise their medication to their individual needs. The condition is progressive therefore review of medication is ongoing and as well as clinic review, people with Parkinson’s and their family/carers can access the Movement Disorder Service directly through telephone or email contact, usual working hours. We are in the very fortunate position whereby if I am out the office and not able to take a call, Angela Haining or Ann McCracken (secretaries) can speak to the person calling and very often help with their problem. Angela organises our out-patient clinic lists and this offers a patient-centred approach resulting in very few cancellations or non-attendance.
In an attempt to promote getting the correct medication at the correct time, I initially wrote to each Charge Nurse (including Community hospitals) to identify a Parkinson’s link-nurse and teaching sessions were held for them with the expectation that they would then raise awareness with their colleagues. This helped me to get to know ward staff and hopefully made staff aware there was a Parkinson’s nurse for our area.
The IT department was very helpful with installing an email alert system. This means I am contacted when a person with Parkinson’s is admitted to DGRI or a community hospital. This allows me to check their Parkinson’s regime and help staff to administer medication accurately. We have pill timers which can be helpful when times are out with usual drug rounds. I can also provide staff with information about social circumstances, multi-disciplinary input they made have had and what their usual presentation is. People with Parkinson’s can display considerable variation in their abilities dependent upon numerous factors including change of environment and routine, presence of infection, dehydration, constipation and of course, alteration to medication.
A Self-Administration of Medication policy for people with Parkinson’s was agreed with input from Gillian Burgess (Pharmacist ward 18) and Mrs Alice Wilson (Deputy Nurse Director). With the introduction of HEPMA this will need to be reviewed and updated.
Another area of concern is the issue of Nil By Mouth. Parkinson’s can affect the ability to swallow safely and it is not unusual if a simple swallow test has failed, for a person to be made NBM until their swallow has been assessed by a Speech & Language Therapist. Another scenario we see routinely, are people NBM because of bowel obstruction. If a person has their Parkinson’s medication stopped abruptly, they are at risk of Neuroleptic Malignant Syndrome (symptoms include altered conscious level, pyrexia, muscular rigidity, raised creatinine kinase, fluctuating BP, tachycardia). This condition is potentially fatal and the reason for my concern when a person’s medication is not given. If medication is not brought in to hospital by the patient, it must be sourced as a matter of urgency and cannot wait until delivered by pharmacy. If a person is unable to safely swallow oral medication for whatever reason, then a rotigotine (dopamine agonist) patch 4mg/24hr can be applied as per Clinical Handbook (see HIPPO). Please contact the Movement Disorder Service on 33909 to ensure we are aware the person is an in-patient (can be delay in email notification) and we will review the dose of rotigotine. Symptom control may require co-careldopa suspension via NG tube however the application of rotigotine in the short term, can prevent a serious deterioration in health.The evening of the award ceremony was very glamorous and a lot of fun. I feel very strongly that although I collected the award, it was only possible because of the amazing team of people I work with including Dr Donaldson, Angela, Ann and staff at Nithbank Rehabilitation Unit where our weekly out-patient clinics are held. Unfortunately, the others could not be with me on the night but I had support from colleagues from ward 18 who were nominees in another category.
World Parkinson’s Day is the 11th April 2016 and Parkinson’s Awareness Week is from the 18th – 24th April. Look out for posters advertising our Cake, Candy and Book Sale on the 15th April to support Parkinson’s UK and our endowment fund.
And finally, thank you whoever you are who nominated me, still a mystery!
Susan Coull is a Parkinsons Nurse Specialist for NHS Dumfries and Galloway